How to Support a Loved One With Cushing’s Disease
When someone is hurting or struggling, we may find ourselves wanting to have all the answers for them. We may jump to offering solutions and making assumptions about what’s needed, but that isn’t always the best approach. Other times we may back off because we don’t know what to say and think that saying nothing may be better than saying the wrong thing.
No one should expect to have all the answers — even the people living with rare diseases won’t have all of them. But here are some tips that may help you offer good support.
First, remember there is so much power and beauty in simply holding space with people, allowing them to express themselves without fear, judgment, or burden. There’s a power in just being there within that moment, listening and sitting with them.
Before my diagnosis, when I was in my most difficult days and undergoing various medical tests, the most valuable support I could have was for someone to listen and truly hear me. Living with a misunderstood or undiagnosed chronic illness can be incredibly isolating. Symptoms may cause patients to be homebound, feeling overwhelmed and unable to reach out for support directly.
Within that space, we can also ask the person with a rare disease what they may be looking for. Needs vary, and patients may want support with researching something, making a phone call, or spending time together.
Depending on your relationship, it can be useful to offer specific suggestions of ways that you can help. Simply saying “let me know if you need anything” may be too general and go unanswered; the person with a rare disease may feel like they’re burdening you. But offering a concrete idea can be a way to show you’re eager to help them.
If there is something your loved one enjoys, such as a special meal or coffee, that can be a nice gesture. Simple messages and cards were so valuable to me when I was feeling isolated and scared about what was to come with my health. Small gestures can be a way to show that you’re thinking of them and are able to support them beyond that simple act.
For some, you might help the patient appoint a spokesperson who can let others know about health updates. This can eliminate the repetitive messages, which can be difficult for the patient who lacks energy. It can also be emotionally difficult to have to repeat bad news, or to cover when there are no updates because of a difficult disease course. There are so many changes, symptoms, and things to track that it can feel overwhelming to respond to messages at times.
Others may use the spokesperson as a place to reach out with questions or learn other ways to be supportive. And don’t forget to support that spokesperson, as well, or one another as needed. Illness, after all, can be difficult on the support system as a whole.
Would you feel comfortable sharing this post with your loved ones as a way to show them how they can best support you? What tips do you have for others who want to support their loved ones with Cushing’s disease? Please offer those tips in the comments.
Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.
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